new, scared and confused

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JMH

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Jun 11, 2006
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CA
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Manitoba
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The Pas
Hello,
My father is 77 and has just been diagnosed with ALS. We lost my Mom last November which devastated him as they were married for 52 years and had never been apart. He was diagnosed with Parkinson's Disease in April, put on meds. for 3 weeks and we finally got him to a neurologist June 5, 2006. After looking him over, the doctor said he was almost 100% sure he had Lou Gehrig's disease, but would need an MRI to confirm this. He gave my Dad three years to live.
My question is...is it possible to diagnose this disease without further testing? Are there a specialist in Manitoba that we could take him to? I would appreciate any advice that would give us a little hope.
We are all scared and confused.
Thank you,
JMH
 
Joined
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Messages
5
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Loved one DX
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CA
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Ontario
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Whitby
New Member

Hi there....I know exactly how you are feeling....my dad is 57 years old and was just diagnosed with ALS April 11, 2006. He has lost the use of both of his arms and he now is having trouble with his throat....his symptoms seem to be coming fast....His doctor has indicated 2-5 years but I am afraid that with the symptons coming on so strong and so fast I am not sure if me and my sisters/family will have that much time with him.

I am sorry to hear about your dad and my thoughts are with you as I know exactly what you are going through. It is hard to even imagine this is happening.....

I don't know what to do myself or how to help him or anyone else...I feel hopeless and I am scared of what is to come in the near future.....

Take care

Lisa (Whitby, Ontario, Canada)
 

Barbie4

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Stay Strong

Lisa:

Stay strong! Your Dad will need your strength now and in the future. Do whatever you can to help yourself learn to cope. come on here and vent, ask questions or cry. Whatever you need. There are lots of wonderful and caring people here. They told me 3 months ago that it would get a bit easier to deal with, and although I cry still and feel overwhelmed some days, I can still live my life. My best friend was diagnosed in March with ALS and is only 41 years old. It is not easy, but I find my strength knowing how much she needs me now.

thinking of you and your Dad

Barbie
 

JMH

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Joined
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Messages
42
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Loved one DX
Country
CA
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Manitoba
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Lisa in Ontario

Lisa,
Thank you for your message. I'm so sorry - it's so very hard to come to terms with something like this. My Dad is 77 and up until last fall he was working his farm and caring for my mom who wasn't doing well.
We lost her in November and Dad was beside himself. They would have celebrated their 53rd wedding anniversary in January. We thought it was stress and depression, then he was falsely diagnosed with Parkinson's Disease. Now this...I would gladly deal with the PD - ALS was the farthest thing from my mind. When he was diagnosed he said the doctor gave him 3 years. It's heartbreaking and I would give anything if it wasn't so. He has gotten so frail in the past 4 months I can't imagine keeping him with us that long. I've done nothing but read and read and read on the symptoms, diagnosing, etc. If only there was a little hope. My thoughts are with you and anyone else going through what we are.
Judy in Manitoba
 
Joined
Apr 20, 2006
Messages
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Whitby
Getting Harder

My dad's symptoms are coming on really strong now.....he has a lot of pain from the spasms in his muscles which have now moved into his shoulders, neck and back....his arms don't work well anymore he can hardly hold his tooth brush. And this is only November we are talking only 7 months since he was diagnosed.... We are trying to maintain a positive attitued but it is really hard.....we just married off my youngest sister and that was really hard for him.....he could not hold his arms up to dance with her at her wedding but we all made it through. My other sister who is not married yet is taking this all really hard as she is expecting that he won't be around in the next couple of years to walk her down the isle.....but again we have to remain positive right......

My dad has spent about $5000.00 or more dollars in a holistic detoxification which has not helped to slow the symptons down at all.....and he has finally decided to leave work and go on Long Term Disability which I we are all very happy about his decision....

It is time for my dad to start doing what he loves to do and it is time for him to start living his life for himself.....

Take care everyone....


Lisa from Whitby
 

Al

Moderator emeritus
Joined
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Messages
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Hi JMH. Sorry about your dad. There are ALS Clinics in Manitoba. Just how far you are from one is the question. I think the only major one is in Winnipeg. There may be Neurologists that specialize in ALS closer. If you call ALS Manitoba they should be able to help. You can get their number at www.als.ca . At the very least I would think you need an EMG and NVC to be done for a diagnosis. The MRI just rules out tumors and other nerve damage. Without knowing all the tests done I'd say that more need to be done. I hope that they aren't just writing your dad off because of his age. Sad to say but it does happen. AL.
 

Al

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Hi Lisa. I'm the same age as your dad but have had this fun disease for 3 or 4 years now.
Glad you found us but sorry for the reason you had to come looking. If you look at the front page of the site you will see the scam watch section. In it is described the treatments your dad took. There are piles of people just waiting to take advantage of us because we have hope that these scammers might be able to help us. The only thing they do is get rich and we have false hope and empty bank accounts. As I have said before live for today. Plan for tomorrow but live today like it may be your last. Don't put off doing the things you want to do. One of the first things I did after diagnosis was go skydiving. Tell your dad to do what he can while he still can. AL.
 

ellisa

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New, scared and confused also

New, scared and confused also
Hi, Let me start by first apologizing if I am not sending this correctly (Sorry).

I Found myself here trying to find answers to what has been going on with me for the past 5 almost 6 months now. I guess I should start by explaining a little about myself before I start rambling on about what has been happening to me. I am a 36 year old female from New Orleans, Louisiana, married and have one daughter age 5. I am currently under the care of a neurologist who I feel is dragging his feet or maybe I feel this way because I am scared and do not know how to prepare my family or myself for the future when I do not know what the future may have in store for us. I have undergone extensive blood work all were negative. Had MRI with and without contrast of brain and c-spine only revealing herniated discs at C4 and C5, 24 hour urine test negative, and I have also been tested for lyme disease along with Wilson’s disease need-less-to-say both were negative. So due to process of elimination where or what should I do next. My gradual decline is terrifying me and yet there or still no answers.
I suppose a brief synopsis of my symptoms would be appropriate, because I suspect and I believe my MD. Also, suspects ALS but is not finished using me as his personal pin cushion. Okay it all started the middle of July 06 when Right arm and hand were entirely numb, cold to touch, swollen and turning colors. Went to General Practitioner thought it could possibly be pinched nerve in arm, went back 1 week later and referred to Rhumetologist , thought auto-immune disease like Lupus, Scleraderma ect.... all test neg.
I then started with tremors in right arm along with numbness in left foot in toes, difficulty walking, and slurred speech along with trouble swallowing. Referred to Neurologist that was 5 months ago and a noticed general decline. I cannot drive anymore, weakness in leg, foot, arm and hands with increased numbness in right hand and fingers. In the past 2 weeks have noticed my breathing becoming a struggle along with burning in my left foot and right fingers along with cramping under my right and left rib cage. My speech is okay but have problems pronouncing some words. Eating and drinking lately has become a very careful task because certain foods and liquids seem to get caught have way down. Have not worked since Aug. 06 due to limited ability and or difficulty in walking (Become exhausted very easily). I have many more symptoms/problems but no need to bore. I guess my question is where do I go from here open to any suggestions. I am really scared and confused!
 

liz

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Joined
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Messages
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PALS
Diagnosis
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Ellisa

:confused:

Are there still problems with access to medical care down there from last year's storm? I'd love to see you getting a second opinion from a specialist so you can get the right kind of treatment. Can you travel if need be to see another doctor? Can you get someone to stay with the kids? Check the quick links on this site for more info about ALS treatment centers in your region. Maybe if you call a nearby center you can get some direction with this. Don't give up!

Liz
 

ellisa

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Learn about ALS
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Liz,
Thank you for your quick reply. To answer your 1st question about medical care here in New Orleans and in the surrounding areas it is nothing like it use to be. It is very difficult to get an appointment with any good Doctors and when you do the wait is at least 2 tom 3 months. I was fortunate to see a qualified neurologist quick due to my employer who deals with Doctors everyday owning an MRI company, I am or was an x-ray tech. But I am being to feel like he (the Neurologist) is confused or hit a brick wall with me. I have an appointment with him tomorrow, hoping he orders other testing besides blood test. To answer your 2nd question I do have people who can watch my daughter so I can travel. Since I have been unable to work or drive and seem to be prone to falls my Mother stays with me while my husband is working.
 

liz

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Joined
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Messages
642
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PALS
Diagnosis
11/2006
Country
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Ellisa -

I'm very glad to hear you have some help at home. If you wait a little while, I bet Grampal will jump in with some sound advice. I think he's a bit of a night owl so give him some time.

Liz
 

ellisa

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MtPockets

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Joined
Jun 1, 2006
Messages
1,528
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PALS
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Gulfport
Welcome to the forum Ellisa,

I have a daughter by that name and you and I are just about neighbors. I live in Gulfport, Ms.

Two test I would recommend you get as soon as possible are the nerve conduction study if you have not had it yet and the EMG. These will give your neurologist a really good idea if it's ALS. It sounds like you have pretty much covered all the other tests to rule out most anything else.

If you need another Doc, At Gulfport Memorial, which is about 70 miles from New Orleans, there is a wonderful Neurologist by the name of Dr. Grow. She is paralyzed from the waist down and can identify with her patients who have nerve related problems really well. If you need any numbers or any more info just let me know.

God Bless
Capt. AL
 

ellisa

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Thank you for info

Mt. Pockets,

Thank you for the wonderful information. I have an appointment tomorrow with my Neurologist and will certainly ask for those two test. But my family and I have come to the decision that if after we leave the doctors office tomorrow and still feel in a fog by him not at least giving us some type of direction of what to do next or some type of indication of what he thinks my symptoms are being caused from it is time to move on and get a second opinion. We are willing to go cross country to be seen by a qualified doctor, so it is nice to know there is one right around the corner. If you do not mind me asking, ( I know you are not a Doctor), but do the symptoms that I have described sound like ALS. Just looking for a little in sight on what could be causing me to have such symptoms which continue to become worst or new every day. Would like for someone to just tell me what they think. The not knowing is driving me insane. My own Doctor will not even tell me what he thinks. Thank you in advance.

Oh by the way is your daughters name spelled with an E also.

Thank you and God Bless,
Ellisa
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
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Ms
City
Gulfport
Glad to be of some help Ellisa. Yes my daughter name is spelled Elisa.
If you look at eh members list under m for mtpockets and click on the posts I have made you will find a full description of my symptoms. Maybe that will help guide you.
I'm no Doctor, but the symptoms sound very similar to mine sorry to say.
Oh by the way, If you decide to try to get an appointment with Dr. Chelsa Grow call the main number 228- 867-4000 at Gulfport Memorial Hospital and ask to be transfer to her office.

I hope and pray that you do not have ALS, but maybe something simple that they just missed. Let me know if I can help in any way.

God Bless
Capt. AL
 
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